“WTF is that? Looks like something that was partially digested by my dog.”

“Lobster.”

“She looks like a glazed donut.”

“I dated a girl with a mild form of Ichthyosis once.Thankfully she was Filipino so her skin was naturally brown, otherwise she’d be as bright red as her. I thought her skin was cool.. it certainly wasn’t unpleasant, but had a nice texture. Plus her boobs felt like underinflated basketballs… Very fun to squeeze :)”

“Seeing people like this smile makes me uncomfortable. It looks like a lie; they are only smiling in an attempt to fool themselves that their lives aren’t horrible. You can see it in her eyes. The same rehearsed dead-eye mouth-smile in all her pictures. Gives me the willies.” (That photo was actually taken on one of the happiest nights of my life, when I met the Rush cast.)

And there were countless diagnoses (so many people educated by Dr Google) and assumptions of sunburn. They annoyed me a lot.

Then I looked further and there was SO much support. People had linked to my blog and become educated. They’d called out the nasties. There were SO MANY positive comments about my appearance. One person said I look like Geena Davis:

–]juliabl 1 point 31 minutes ago

There, but for the Grace of God, go I. Parents, teach your children not to laugh at people that aren’t what society deems as “perfect”. That’s my sermon for the day, keep your comments to yourself if you don’t agree with me. I don’t need any help, thanks tho. Except for her condition she has a smile that makes her look like Geena Davis.

permalinksavereportg

“There, but for the Grace of God, go I. Parents, teach your children not to laugh at people that aren’t what society deems as “perfect”. That’s my sermon for the day, keep your comments to yourself if you don’t agree with me. I don’t need any help, thanks tho. Except for her condition she has a smile that makes her look like Geena Davis.”

One guy said he wishes he hadn’t missed his chance to ask me out on a date.

And this guy, he was a standout:

“You, madam, are the strongest motherfucker I have ever HEARD of, let alone met. If you are ever in boston, i would be honored to buy you a beer.”

I knew the day would come that someone would create a Reddit thread about me, using my photo, having a laugh at my appearance.

For years, that fear was why I didn’t share photos of me online. But now, after gaining confidence and support through years of blogging, I couldn’t care whether they call me a lobster or silly putty.

The love I have around me and success I have had through telling my own story to break down stigma like these Reddit threads is stronger than any of those words.

Yes I have Ichthyosis. Yes that picture is me. Don’t fear it and don’t criticise it. I am proud of the way I look, what I have achieved and for telling my story.

FYI: I have two forms of Ichthyosis – a mix of Netherton’s syndrome and erythroderma. My skin is shiny because I use paraffin. My body is less red than my face as it’s not exposed to the elements, but it is generally more painful. Ichthyosis is survivable – I have lived a very full life.

Thanks for linking to my blog too, so people are informed of the real me rather than through the speculation on this thread. For those who missed it, you can read more about me at http://carlyfindlay.blogspot.com

The original poster gave me an apology. A bit backhanded, but I thanked them all the same.

“Im reading all this and I apologize!

I was looking for “champagne fridge” on google images. When i saw your picture, I thought “WTF!” and further: “allergic reaction“, also your hair looks a bit on fire so I put it here.

Hopefully you see it as a good promotion for your blog and chapeau to you for being awesome!”

I felt a bit sick. So many people dissecting my photo on the Internet. But then I remembered.

When this picture was posted overnight, I was content lying in the arms of my love, having just seen a band and eaten a great meal – a night filled with laughs, and these posters were making fun of a stranger on the Internet. I think the location of this post, and the title is a clear indication of the original poster’s intent. However, I say the others who joined in with the ridicule and the armchair diagnoses are just as voyeuristic.

I am resilient. I’ve got thick skin. These are just words on a screen. I am safe and loved, strong and intelligent, and can fight back with awesome.

But I worry for those who can’t. What about those people who are mocked online and do not have the strength or words to defend themselves? Or even continue living?

This isn’t just curiosity or having an innocent laugh. This is the ridicule of a stranger en masse. Think about how that impacts a stranger. Their parents, their partner, their children. Stop being a coward behind a screen. Get out there and experience people of all types.

Today’s comments on Reddit showed me that the Internet is full of pretty awful people. But it also showed me people are so kind, and are willing to learn.

Thank you to everyone who went in to bat for me. Thank you. One of my worst fears happened and I smashed it! Fighting back with awesome wins every time.

For those visiting my blog fresh from Reddit, visit these pages to see how I live with ichthyosis, resources, and that I live a great life:

I read all the comments this morning before I went to work and I felt furious and sick for you. Not because you should feel like you should have anything to be ashamed of, but because people are sometimes so inherently nasty and stupid. Its so easy to be nasty when you don't have to put a name to a face or have the balls to say something so awful right to someone in the flesh. They think they are wildly hilarious and could get a pat on their back from their equally stupid and faceless friends. Carly, you've got the right attitude. Your night was spent with someone you love, enjoying life. Their night was spent trolling the internet… you gotta wonder who's gotta feel more for who! ha!

I would never have the balls to write intensely about my medical issues / post candid pictures of the parts of me that I know others would ridicule. I'm glad this turned out to be a learning curve for so many. Also, I really wanted to tell that OP to go f himself, even AFTER the "apology" and if I were you, I wouldn't have accepted it. Backhanded indeed. But then again, you're probably a better person than I am 😉

You are amazing Carly. I think I would have just cried and then felt awful and sick. Everyone is different but I can't even mutter some of those nasty comments even behind a screen. It just goes to show how bad cyber bullying can be but it's great that some of the people have come across it and have learnt something as a result.

I am so hugely impressed by your reactions to this that I require interpretive dance to properly convey my impressedness … Since we're both in Melbourne, hopefully one day we'll meet and I shall wave my arms to expressed how impressive you are!! Proud to internet.know you 🙂

I see this sort of behaviour and feel ashamed of the human race, then I see a reaction like yours Carly, and all your supporters, and my faith slowly becomes restored again. You win all the internets, and don't you forget it!

I'm not sure if you remember me, Carly, but we met at BlogHer a few years ago. I remember our "speed dating" conversation clearly, and was very impressed by your grace and positivity. It's amazing how sharing our struggles and life situations can help us cope with the hand we've been dealt, and inspire others to become better people. It makes me sick to know how people troll the internet for people to tease, harass and poke fun at. You handled this situation perfectly. I'm sorry for any hurt you feel out of this really awkward situation, and know that you make a difference in the world. Much love!

I know a lady who is disabled (has EDS and various internal complications, and uses a powered wheelchair) who was told by some youths in Birmingham a couple of weeks ago that she was disgusting and that people like her shouldn't be allowed on the streets. And she's not disfigured at all, let alone "disgusting" (I've met her), a bit chubby perhaps but otherwise like a normal (and quite attractive) woman. Not sure what it is about disability that brings out this reaction. It's all the more depressing to see adults doing it, as how on earth are kids meant to learn not to stare and be rude?

Amazing! You responded with class and took the high road. You have more class in your pinky than those negative ranters have combined. By the way – I LOVE your title – Appearance Activist. Keep doing what you're doing, because you clearly rock at it! Happy holidays!

Good on you!!! You truly showed some class here. It's amazing how utterly rude people can be when hiding behind a keyboard. They type words they (hopefully) never would say to someone's face. Basic forms of being polite seem to go down the drain soon as they feel anonymous enough to say whatever comes up in their mind. And it's sad enough already that things like that come up in anyone's mind, let alone typing and publishing it. I wonder how those people would react if treated cruel like that themselves. I truly enjoyed reading your response. Wishing you and your loved ones a blessed Christmas

You're now on the front page news.com.au – hopefully more ppl click through to your blog and learn a thing or two today 🙂 Yay for standing up to mean and ignorant ppl who hide behind the anonymity of online usernames.

people seriously need to get a life. i really hope the karma whore that posted this enjoys the karma in spite of your pain. you are a strong and beautiful person, if you are ever in south florida I would like to buy you a beer as well!

I was just reading a facebook page about a sweet little two year old who has the condition…and today, I saw an article somewhere about your recent ordeal on reddit (or whatever it is), and how you handled it. Just want to show you support from upstate New York. By the way, happy belated birthday, and blog anniversary! Rock on, Sista!

I came across your story on Yahoo 7. I came straight to your blog to show you my support! The way you handled the whole situation was amazing and we can all learn something from it. It's a pity that we live in a world full of people who take joy in ridiculing and humiliating others.

Hi Carly, good on you! As a 32y/o male life-long sufferer of atopic eczema, I really admire what you are doing in breaking down the barriers on skin conditions. Many people just don't get it, if my face is bad, people won't sit next to you on crowded train (its not contagious people!) which does wonders for self esteem. Many friends and family constantly bring it up, when, I'm a person too, just trying to do my best to get on with life and don't need to be constantly reminded of it, it shouldn't be a definition of who I am as a person but so many people judge by looks no matter how much they think they don't.

Good on for you for taking the moral high ground in your response, and giving some perspective on skin conditions which many Australians have to deal with every day.

You didn't just stand up for yourself; you stood up for many people who, as you stated, can't or won't stand up for themselves. The internet thug is cheered on in social media, but it is people who take time to educate or be educated, to listen, to learn, to empathize that create and keep connections and online communities of real people. Merry Christmas and don't let the ignorance phase you.

Hi Carly, you're response was amazing! A friend of mine shared it in Facebook and was the first thing I read this morning. Sadly, I'm not surprised by the comments these people made. the safety of anonymity disconnects people from others and their own emotions. You did a wonderful thing by confronting them and calling them out. We actually took a uni class together several years ago, journalism I think. I remember how funny and energetic you were, telling us all a few Savage Garden stories (I won't repeat them here!) Anyway, way to go taking it to the bullies! Hope you have a great Christmas and New Year!

I think you r beautiful, and and that smile WOW!,, it broke my heart to see some of the things that were said, You see I was born with NF, this is where tumors will form all over my body, and yes even on my face, i have heard every name from bumpy, to toad woman, but I have learned to ignore, for u see I believe God created me for something great, as I feel he did you too, people are mean and cruel, and those people I refuse to waste my time on, You r awesome, stay strong, and God bless

R.E.S.P.E.C.T! That is what I feel for you! We all have lessons to learn in this life, and you have shown that you are learning that love conquers all! The people who make nasty comments will have their own lessons to learn, and I believe that they will do that the hard way! You are amazing, an inspiration, and I am glad I came across your story. It doesn't matter WHAT others say, even though it can hurt! What matters is that you are a brave beautiful woman and can hold your head up with pride! You go, Girl!

Carly, I think the way you handled things was great and I wish you well. My son , who is 30 in January, suffers from a form of this that makes having a shower feel like acid on his skin. Because of this he has body odour problems. When he was young he shed skin like a snake and has always had to put up with strong irritation.Despite all this he has been able hold a position dealing with the public behind the counter in a large food retail busines. He has a large number of friends and workmates who stand by him and make his life better.My hope is that one day a cure may be found for this problem and people like yourself and my son may lead a normal pain free life.

You are literally going from strength to strength. I've been so happy to see this develop in a relatively short time. You have your superpowers and you are using them! (One clueless fucker at a time, love) xx

carly take care dear I no what its like when we loose our face we loose our dignity and the hoards of dogs bark on and on -lest us not judge them for they are weak -lets move forward god bless you carly

Hello Carly, just read an article about you on the dailymail.co.uk.. And just had to come to your blog and show my support. You are beautiful inside & outside. It takes a real nice person to react towards the comments as you did on reddit. Thank you for inspiring us.

Carly, as you already know the internet pulls out THE most vile of people, hiding behind their screens, safe from counter attacks. This I know as I have MS, while it isn't always as apparent as what yo havfe, it still doesn't shield me from all the 'Faker wants attention' calls or the 'I have found THE cure that NOBODY else has' calls. After a while, I just glaze over while those people have their say. Polity, I smile (yes, I know THEY can't see me, but I do it anyway!) and read the next ludicrousness. But Carly, YOU make me want to find a way to be even stronger! Thank you for that! And, like that gentleman in Boston offered, if you ever find yourself in Monterey, my wife and I would LOVE to buy you lunch! Thank you.

Hi Carly, I saw your blog post on Mamamia and then read your extended version here – good on you for standing up for yourself and for those who don't possess your strength. Thanks for sharing your awesome, and story – and merry christmas 🙂

I read your story on our local news website here in central montana. I was extremely impressed with your poise and fortitude in your response to these ignorant fools who hide their ugly behind a keyboard. I know it still bites and hard but know there alot more of us around that look at a persons soul and actions alot more that the package. Blessed be.

Carly you are truly an inspiration, as a psoriasis suffer all of my life I have been the brunt of many names and comments and stopped going to pools/beach’s playing sport because I felt exposed and covering from head to toe. You have embraced your world with determination to be accepted for who you are and I hear the strength in your voice, and I dearly hope that it will be heard by many. Take care and God Bless

The people who wrote those things are very sad and probably have much lower self esteem and a level of awareness then you. You can't blame them for thinking your smile and happiness is fake.. they think this way because they don't know any better..because their smiles.. their friends and their Facebook statuses are fake..

It's fantastic that something so thoughtless and stupid has led to raised awareness of ichthyosis and a flood of visitors to your blog. I'm so impressed with the way you handled the situation. I bet there are some shame-faced commenters out there now.

Reading your story, I am inspired and only wish that I had half of your resilience and positivity. I am always so saddened when people think it is okay to say such things to another human, but for every one of them there are many of us. The funny thing is that though they think you will not do as much as them because you are different – but in truth you will accomplish things they could never dream of because you are extraordinary.

ALL STRENGTH AND LOVE TO YOU 🙂That website's premise, and countless other cybertrash like it, are a testament to the shallow people with nothing better happening in their own lives, than to ridicule humanity. They forget – or perhaps were never taught, they are brothers and sisters to the people they feel so removed from. You, however, are a planet sister I'm proud to have. Awesome on. By the way, your journalism is awesome too.

I loved your positive response to those vicious, petty comments until I reached the part where you said:

"But then I remembered.

When this picture was posted overnight, I was content lying in the arms of my love, having just seen a band and eaten a great meal – a night filled with laughs, and these posters were making fun of a stranger on the Internet."

This I take to mean that it made you feel better that you have a full, socially active, successful life full of love and support and these people are just sitting at their computers posting nasty crap on the internet. I think that finding a glimmer of pleasure in the fact that you're happy whilst your attackers are (perhaps) miserable comes off as a little spiteful. On one hand, I think you're entitled to feel that way, but is it the right way?

When I was younger and I came across people who were mean to me, I would wonder "What's wrong with me?" Then I grew older, and hopefully a little wiser, and realised that it wasn't me with the problem. In most cases when people are petty and cruel, it comes from bitterness, sadness, lack of self-esteem, envy, frustration, depression. It can be really really difficult to look on people with compassion when they're behaving so horribly, but let me just say that yes, you are very lucky to be loved, because loneliness is horrible, almost as horrible as being abused or exploited by the people you love and trust. None of us knows about the lives of the anonymous people tapping away thoughtless, venomous comments on the internet. Perhaps their behaviour stems from a total lack of kindness or conscience, but I'll hazard a guess that in most cases there's something more behind it. The luckiest among us who face challenges in our lives (as most of us do) develop empathy and compassion for others, particularly those who can't see their way out of a mire of ignorance and bitterness. I think it's a very hollow victory to find pleasure in their unhappiness when you find yourself the victim of it.

ALL STRENGTH AND LOVE TO YOU 🙂That website's premise, and countless other cybertrash like it, are a testament to the shallow people with nothing better happening in their own lives, than to ridicule humanity. They forget – or perhaps were never taught, they are brothers and sisters to the people they feel so removed from. You, however, are a planet sister I'm proud to have. Awesome on. By the way, your journalism is awesome too.

I just found your blog because someone posted a link to it on Facebook saying how awesome you are.I could say a lot of things, but I could also just repeat: you're awesome.I have an amazing amount of respect for you and the way you handled this. I don't know if I could've done it the same way.

You are awersome. You are also fearfully and wonderfully made in God's eyes. He loves you all of you, doesn't matter what you look like or are. If others think different, then they are insure and don't know who they are in God's eyes. You are pretty, Have a very blessed Christmas and a Happy New Year. 🙂

Go Carly! I have the utmost respect and admiration for you Carly – sadly there are some rude and ignorant people in the World. The positive feedback you have received and your own "awesome" reaction to those comments makes up for the rest. Have a wonderful Christmas and an even better New Year! 🙂 xxx

A girlfriend of mine liked your story through a page she follows on Facebook. She usually "likes" good stuff so I have a tendency to click through and read what's up without thinking much about it — generally it is something funny or pop culture related. This though, this is awesome. It's a gentle reminder to all of us to mind what we say and how we react to anything different from us. It's easy to sit back and have a laugh at something we don't recognize as normal to us. I have done it, as have many, many, many other people. Thank you so much for sharing your story with courage and grace. You have inspired me (and I'm sure countless others) to be more aware of how we react on the internet and to not throw out judgement when we don't know the whole story.

When I was a child my father was badly disfigured in an accident. To go anywhere with him was to be stared at. As a result, I became very self-conscious about how I look and I look "normal." You are like my father. Brave. Smart. Beautiful. Heroic. I would be happy to go anywhere with you. Keep posting pictures. Keep telling stories. You are wonderful. Each of us lives most of the all with the things we choose to do in life. I think you're making GREAT CHOICES! Keep putting it out there.

Wow, I admire you so much for posting this and addressing the fucked up issue as it is. All I know and all I care about is, your book is the funniest shit I HAVE EVER READ IN MY LIFE. I snorted, I scream-laughed, I scared my neighbors and my cats. I laughed so hard I cried. I bought the book as a gift for my best friend when I had only got to page 55!!! You rock lady and I think you're awesome, for the writing/blogging that you, for going through what you have with your health issues. You are my new favorite person!

You are a beautiful woman, inside and out. You give inspiration to everyone struggling with their own self image, we ALL have something we aren't thrilled about. Thank you for sharing your story and educating people!

We should be WTFing about these creeps without an ounce of empathy but we wouldn't because it would be unkind. Kindness and bravery vs cruelty and faceless cowardice. You are without doubt the better person and it truly saddens my heart that this sort of thing even occurs in our world.

Thank you Carly. You inspire me. When I was younger I was taught that it was cool to make fun of others. I have grown up a lot since then and I don't find it cool anymore. Now, I try and help others as much as possible. Hopefully God can forgive me for being so stupid and weak. Thank you for being… You!

I made my way here from Instagram. I've been educated today on something I've never encountered before. I can totally see the Geena Davis reference. =) I have got to tell you, you are a stronger woman…human being…than I am. I don't have any "conditions" aside from the ones in my head and honestly, I would be a mess. I'm sure you had moments where you took it all personally, but your response and how you're handling this publicly is an example to everyone. As for Reddit, I believe all of the cold, heartless trolls live there. I've yet to hear one good thing about that site! You go girl and I commend you!

It has taken me awhile to read this. I know I would get angry and upset. Which I have, but I am also so proud of you. You an example of a person who has dignity and strength, you show me ther is good and there is love in the world.

To me you are an amazing person that has so much to offer and teach others. I'm sure your condition has taught you a lot about having empathy for others and not being judgemental. If we didn't have people like you in the world we would lose an entire dimension of our own humanity. A dimension that affords us the opportunity to reflect on who we are human beings removing all divides of prejudices which ultimately relate to anything that we see as different to us: race, gender, religion and health conditions like yours. I admire your mental strength and only wish that I could have an ounce of courage and determination that you have.

Keep teaching us all how to be better human beings.. Because in my opinion, this is really what life's journey is all about.

I have just come and visited your blog after reading your story on Twitter, and I am extremely touched by your story. You are such a beautiful and inspiring woman, and I greatly admire your strength. You obviously have a fantastic outlook on life, having come away from this incident with such strength and dignity, and I deeply admire people like that. Having read this article, I am just so saddened that there are people out there who would say something like that! After seeing the damage it causes through the absolutely tragic death of Charlotte Dawson, a very strong woman, people should hopefully know that their comments on the internet are indeed powerful – why can't we use the internet to bring people up? Internet trolls are cowards, and most likely live very miserable lives – nothing compared to the meaningful life you live.I have never met you before, but simply from looking at your articles I can tell that you are an extremely beautiful woman, on the inside and the outside. You have such a lovely smile, and it makes me want to smile too! Congratulations on the success of your entertaining and informative blog! I will be a regular visitor now! Wishing you all the best for the future 🙂

After reading your story through Twitter, I came to your blog to hear about your story, and I am extremely touched by your strength. You are such a beautiful person, and reading your blog is incredibly inspiring. It makes me so sad to hear people say such terrible things, and I just can't understand why! Internet trolls are cowards, and most likely have very miserable lives – nothing compared to the amazing life you have.I have never met you, but from what I can see on your blog, you deserve nothing less than absolute praise! You are clearly a very very beautiful woman, on the inside and outside, with such a lovely smile! Congratulations of the success of your wonderful and informative blog! I will now be a regular visitor. I wish you all the best for the future! 🙂

I think you take exactly the right approach Carly. You're not naive enough to think nasty comments wouldn't be made, but you're not getting worked up about them, and you're not letting it stop you participating in social media. There's another phenomenon at work here too – people making comments on comments. When something unpleasant like the Reddit page occurs, it brings out a type of delusional person who lets you know they're shocked, horrified (and even 'sick' for godsakes!) that nasty comments could even get made. What technology offramp have they been living on, or is it more a case of a narcisstic need to tell the world they've just been outraged without actually having to invest anything in their reaction? People (often Americans) who then tell you they want to buy you beers because you've just done the bravest thing in the world are exhibit B. Apart from exaggerating, they're probably using their comments to let the world know they're caring and tolerant, in a kind a corollary to the humble-brag (they'd probably drop dead if a stranger turned up to take them up on the offer).The internet magnifies feelings and criticism, exponentially, good and bad. Social media is great, in context, but remember, narcissim is a common theme and it's a lesser substitute for real life. Things said on it (good and bad) should not be taken too seriously because, unlike real life, none of its participants have invested anything in it other than a bit of typing.

As a mom of two young girls (ages 7 and 11) I'm continually searching for ways to make them strong and point out the good in people since being an asshole is a choice! I'll be sharing this post with them later as a lesson in kindness, self esteem and the ability to focus on the positive. Carly, you are everything I hope for my girls to be when they're grown (and BTW you do look like Geena Davis)

Very late to this, but I stumbled upon your story through "A Mighty Girl" on Facebook. I am so inspired by how you turned a pretty mean-spirited feeding frenzy into an opportunity to educate and broaden peoples' minds about ichthyosis. I had never heard of ichthyosis, but am now learning about it and – more importantly – about the extraordinary person *you* are. You have a lot of guts, and I hope to have 1/2 the courage you have to so honestly and kindly shut peoples' bullying down. I will be a regular reader of your blog now, because I'd much rather listen to a voice like yours than anyone well known in popular media (except maybe Rachel Maddow!) Thank you.

You are such a beautiful, inspirational person 🙂 you make the world a better place every day by simply being you! Thank you for being so courageous, you are such an amazing person. Sending all my love from Ireland xx

WTG Carly!!!! I have a form of ichthyosis where my skin is dry, scaly and flakes off and falls off everywhere as well as being as rough as sandpaper. Have had this since I was a kid. I give you a standing ovation for standing up to the bullies. Sometimes it's really not that easy to do at all especially when it's something that you can't help such as your skin.Your response to their nastiness is just totally awesome and inspiring. I have lost count of the amount of nasty "Why don't you use moisturiser". My skin might be scaly like a dragon's but it's not an armor like a dragons. Comments like that still hurt. Well done Carly. Stay strong and stay beautiful. You're an awesome inspiration. Thank you for bringing light to ichthyosis. <3

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The material on Tune into Radio Carly is copyright.
The writing in this blog is by Carly Findlay unless otherwise stated.
Most photos in this blog are by Carly Findlay unless otherwise stated.
Please do not reproduce without permission from Carly Findlay.
This blog represents my personal opinions and experiences. It does not reflect those of my employers'.
The information I provide about ichthyosis is mostly based on personal experiences. Please seek medical advice or counseling before trying any new treatments I've written about.